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Thursday, January 19, 2012

What you can do to help.

I always get asked if there’s anything someone can do to help me in my life with lupus. My usual answer is, other than finding a cure for lupus, no. But recently people have been extremely thoughtful, and have helped me in many ways I'd never even considered. So I thought I’d open up the question to an online lupus community: what can people do that helps you? I’ve been at times surprised and at times in violent agreement with the responses I’ve received. I also suspect that this will be an ongoing discussion; I certainly hope so. I also know other such lists have been published. But in the meantime, here are some suggestions for how to help a chronically ill patient in your life:

Learn about the disease. Nothing is more frustrating than being asked if, for example, I “still” have lupus? It shows a total ignorance of the chronic nature of my disease. I recommend the Mayo Clinic and NCBI for their brief, accessible and clear descriptions of most diseases. And, of course, there’s always a simple google search. It means a lot to patients if their friends know at least the basics about their disease(s).

Do not assume that a patient who takes pain medication is an addict. Not every patient has to take prescription pain meds, but some do. And they take them for the right reason: to bring overwhelming pain down to a point at which the patient can function. Many patients would otherwise spend all day either in the hospital or curled up in a ball of agony on their couches. That is not addiction; it is a necessary treatment for a serious medical condition.

Soft massages/back rubs. Deep massages sound relaxing, calming, and in some situations, sexy. They are none of those things to a person whose body is screaming in pain. A soft, gentle massage, on the other hand, is wonderful. Depending on your relationship with the patient, either giving a gentle massage yourself, or giving a coupon for a massage therapist who specializes in chronic pain would be very, very, welcome.

Gift certificates for manicures/pedicures: obviously only for more girly women (or men), these can be a fun way to take our minds off of our everyday problems.

I try to keep this blog family-friendly, but I want to add that the advice about massages also applies to any other intimate contacts. Communication, of course, is key, but keep in mind that your partner is in always in a great deal of pain.

Easily frozen meals: especially for patients with kids, this can feel like a Godsend. Lasagna, casseroles, ravioli, whatever. When a patient is too spacey and in pain to make a cup of tea, not having to make a meal is a true blessing. Important caveat: autoimmune diseases go in groups, and they are often accompanied by food allergies. Bringing a pasta dish to a patient allergic to wheat is sweet, but not as helpful as you might wish.

Drop off ice-cream or other treat (keeping in mind allergies). Very few patients will ask a friend to go to the store and pick up a half-gallon of ice-cream, but most love it when someone does so!

Don’t criticize us when we are unable to do something. Most of us would give an arm, leg, and three fingers to switch places with a healthy person and be able to do all the things expected of us. We don’t “flake out” so much as pass out. Literally, at times. Please remember that we’re sleep-deprived, in a brain-fog and in pain. Always.

Listen. Most of us try to hide our disease(s) as much as possible. If we’re trying to explain something about our life or illness to you, you should take it as a compliment. It means we care enough about you to try to make you understand our perspective.

Be compassionate. Unless you have our disease(s), you don’t know what we live with. Please don’t say you do. Instead, try to understand how it would feel to be in our shoes, and how hard our lives are. We literally live one day at a time during a flare. Please understand that this is by no means a choice of ours.

Don’t assume that if we look great, we feel great. For many of us, the opposite is true. Personally, the worse I feel, the more I do to hide my illness. If I have perfect "hair," perfectly matching accessories and a cute outfit, it may well mean I am really sick. Outfits, accessories, etc. are some of the very few things we can control. So as our body goes out of control, some of us try to exert control over anything else we can.

Don’t blame our feeling awful on overwork, stress, etc. We may be sleeping 16-18 hours a day, and still feel like road-kill. Old road-kill. We do not “just need to relax,” “take a vacation,” etc. We’re sick no matter what we do.

For patients with kids, offer childcare so a patient can have some time to him/herself.

Offers of rides to appointments/home from the ER. I’ve had to call on friends for this kind of thing at all hours. Sitting in the ER knowing I have friends on whom I can totally depend to pick me up is an incredible blessing to me.

Offer help with household chores. Emptying the dishwasher is a daunting and Herculean task to someone whose lupus (or other disease) is flaring. A simple offer of help can make someone’s day.

Give/bring a patient a heating pad, an electric blanket, or a heated mattress pad. Many of us have poor circulation.

UV-blocking stuff. I've had some awesome people send me uv-blocking clothing; one sent it all the way from Japan! Also, suggestions for sunblock, make-up with high SPF, etc are welcomed. Most lupus patients are photosensitive, so anything that blocks the sun helps us stay less sick.

Ask if there’s anything you can pick up for the patient when you're going to the store. A saved trip = a HUGE amount of saved energy.

If possible, don’t treat the patient differently in a professional setting. Allow us to retain our anonymity as sick people as much as possible. In my personal lab this doesn't apply, as I am not physically strong enough to do things without asking for help. But in an office...let the patient be an employee rather than "the sick person."

Consider sending care-packages or small gifts. This is particularly true if you live far from the patient.A few ideas? Soft sheets or pyjamas; we spend an awful lot of time asleep in bed. An electric blanket, gift pack of a favorite tea (or beverage of choice). And many people these days have electronic gift listson Amazon and other online vendors. Those lists are a great way to find something that would make the patient happy. Gift certificates for online companies are also great. For those of us who start running a nasty fever every time we go "real" shopping, online companies make our lives much easier.

As I said before, I’m sure this list will grow. But these are a few of the suggestions that I have received or (in a few cases) come up with. I hope it helps; I know how desperately helpless one feels when watching a family member or friend fight an illness. I hope by offering these ideas to make you feel a little less helpless, and give ideas of how to do something. I’ve been on both sides of this, and I know how badly people want to help patients!

Very well said. I would offer one last thing: please don't, don't, don't ever tell the patient that you know someone or something that can cure, absolutely cure what's wrong with them. One person when I was in the hospital wanted me to eat a vendor's highly curative special helpful microbial available-only-from-his-property dirt. Eat his dirt. I kid you not.

Thanks, everyone! Fitra2009--I agree it's vitally important that we keep sharing information with each other.

Mom-- that's a fabulous point. So fabulous, in fact, that I'm starting to think I'm going to need to do a part II to this post, as I don't want that one lost in an ever-expanding list. Because it's really, really frustrating dealing with that kind of *$@$!

Hi Sam, I love it! My one addition to the list would be for someone to take the kids for a couple of hours every now and then so I (we lupies) could have some down time. Thanks for taking the time to make Lupus blogs happen. Amy

Hello Sam, i stumbled across your sight through a pin on the pinterest website. I feel a real connection to everything you are saying, in October of 2010 I had my first child a daughter who I now live for. After the pregnancy i became progressively sicker, it took a month and a biopsy of a tumor that appeared on my arm to be diagnoised with Non-Hodgkins Subcutaneous Panniculitis-Like T-Cell Lymphoma Alpha Beta. I was told its slow growing, and i could live years but nothing could be done for me until it got worse. Well strange symptoms still plagued me, weakness, fevers, exhaustions, Severe anemia, joint pain, strange rashes, extreme sensitivity to sunlight, and muscle spasms. I traveled to 3 hospitals looking for a lymphoma specialist, the last at ucla sent me to a rheumy. Then i learned that doctors are finding connections between lymphomas and Systemic Lupus Erythematosus. I laughed at the doctor, until my laughter turned into tears. I was 25 a new mother, and the first thing that popped in my head was (sh*t it took me a month to learn to spell my cancer, and now i have this disease to contend with) A year later i have battled with to rhuemys who have labeled me with get this (a kids meal portion) of lupus. No really thats what he told me, stop complaining you have the kids meal, its just a tiny starting point to this disease, here take some plaqunil and 10mg of fexeril at night you be fine. You'll be fine says the oncologist, you'll be fine says the rhuemys, you'll be fine says my general practioner. Well I would like for ONE doctor to go what we do on a daily basis with our lupus, (being moms) and doing what we do, and then say that crap. No one will perscribe me pain meds, no one will perscribe me anti-anxiety or anti-depressents, hell i live in Arizona and the doctors wouldnt even fill out my info to get a disability placard. I wear a sun hat, and a suv-protective sweater in 100 degree weather to push a shopping cart into the grocery store, i look like a nut but if i didnt wear it i guarantee i would have a rash, flare, and intense pain the next day. God im ranting again, sorry i truely am. I just find it so hard to relate to anyone anymore that when i read your blog i just felt like saying that it made a difference in someones life that you wrote this list out. I connected with it and I truely hope your battle with lupus is a winning one in your favor.

Oh my goodness, you poor thing! I've had to fight idiot doctors, but that is beyond the pale. I've also had to experience the cancer + lupus scenario, which is no fun. I cannot believe how irresponsible your doctors are, not prescribing anti-depressants, disability placards, etc. You make me see how blessed I am to have the doctors I do! I hope that things turn around for you soon; you deserve a break from this kind of *$@$!

Great list Sam! Sometimes as a mother of 4 with Lupus, it is overwhelming. We have sooo much to get done and not enough energy to do it with. My oldest 2 are thankfully big enough to help out, but there are certain things that only mom can take care of. And when mom is feeling ill and hurting all over, kids really don't understand why that trip to the park just isn't happening today. I had a neighbor and dear friend once who included my oldest 2 in her trip to the local pool and let them be just kids for a while. That meant so much to me. my kids had been begging for me to take them and I was already in a flare and knew that being in the sun, even with sunblock was going to make it so much worse. I want my kids to have fun and be kids all the time, but there are times when the pain is too much to ignore or disguise, and I must face the fact that I am not Superwoman. Having someone to fill in for your kids entertainment is wonderful and makes you not feel like the worst mom ever.

As it happens, my mother has lupus as well. She couldn't be out in the sun a lot, so a summer babysitter taught me how to ride a bike. From my perspective as the child of a lupus patient, it turned out great: I got to learn how to do something my mom couldn't teach me safely, AND I have remained friends with that babysitter for about two decades. Win!

Hi Sam, Could I have lupus? I just found your site and find it one of the most informative. I am an autoimmune mess. I have hypogammaglobulinemia w/servere peripheral neuropathy (IGG defiency), sjogrens & raynauds syndrome. I have been on IVIG treatments for 3 years ( took 3 docs to diagnose the IGG dif) and have felt great until recently. Past 6 weeks have been horrid.I have been in so much pain I am in tears. Driving down the road hurts when I go over a bump!!! Mostly joint pain in the elbows, hands, knees (which heat up and swell) and feet.

Past year I have had 3 positive abnormal ANA's along with high anti chromatins. A year ago my C3/C4's were within normal range with C3's being at the low end, along with my Anti chromatins. My per. neuropathy has returned after the IVIG treatments made it disappear. My SED rate was as high as 116 but came back down to 7. My hematologist and neurologist both suspect lupus, my Rhuemy (who took forever to see) and was on her first day. Scared me as she did not check all my joints for swelling and just typed away on her laptop. When she said I have not had a recent ANA when one was right in front of her, RED FLAG! She just said it could be lupus but also could be sjogrens or be from my "other immune issue" and could not say hypogammaglobulinemia. I am not sure I trust her and it takes weeks to see someone so I am at a bit lost of what to do. I can not take aspirin because I have blood clotting issues and take 12.5-15 mg of cummadin. Tylenol and Aleve does very little to relieve the pain. Thank you.

Oh. My. God. Sam, if I weren't sitting in a coffee shop right now, I would cry out with joy for finding these tips. Or maybe I'd just cry. Thank you...profoundly, deeply, thank you. Your voice is clear and your reason so wonderful, and I am going to send this to my friends and relatives that need this right now, if that is ok with you. Most do not understand. Of course, as I am a Ph.D. as well, I will cite you and your site. A million thanks again...I am truly grateful.